This is the fourth installment of a series of interviews with theatremakers who have chronic illnesses. As a theatremaker with MS, my hope is that these stories will inspire all of us, and provide new approaches to resiliency for those of us living with a chronic illness.—Sara Brookner

Sara Brookner: When were you diagnosed with lupus, how did you learn about it, and what was going on in your life then?

Lisa Kenner Grissom: I was diagnosed in my twenties. I moved to Los Angeles to do market research and script development in independent film. It was a stressful job, with a horrible boss, and I woke up one day and literally couldn't move—I was like the tin man from The Wizard of Oz, but without the oil can. I didn't know what it was; I thought I had a bad workout at the gym. It often takes doctors a while to diagnose lupus, but with me they immediately knew.

I had never heard of lupus. I didn't like the name of it, and I was so scared. I moved out here by myself. I was in a state of shock for awhile.

Sara: What was it like to be on your own and going through that?

Lisa: It was really hard. It’s crazy when I think about it now, because I knew so few people, but one person I had become friendly with had grown up in LA and was well-connected. He led me to my doctor, who happens to be the leading rheumatologist in the country. I got lucky. Navigating the medical system is so insane and complicated. Suddenly having a pre-existing condition was a new experience to say the least.

In your twenties, you’re trying to figure out who you are, and I didn't know what I wanted to do exactly. Lupus is the reason I am a writer. It made me realize that the whole time I was reading scripts and doing development, I wanted to be the creator. I had always been circling around writing, but when I was diagnosed with lupus I thought, “This is it.” Faced with mortality, and thinking about the rest of my life, led me to that decision.

I started off by taking an acting class as a sort of a gateway to writing. I would have a scene partner come over, and I’d be lying in my bed beforehand. Somehow I’d muster the energy to get up and work on the scene. I was so intent on wanting to do something—to be creative. That period reinforced my interest, because I was doing a lot of text analysis and reading tons of plays. I was immersing myself. It felt necessary.

Sara: Theatre was a coping mechanism.

Lisa: Yes, it was. And through that I made some really good friends. I started to write monologues, and I would perform them in class. Actors would ask if they could use my monologues for auditions, so I started to think, “This is resonating,” and then I began writing plays. I wrote my first play from my bed, with a yellow legal pad, drifting in and out of rest. Sounds dramatic but it’s true!

Sara: Can you explain what your experience has been with lupus since then, what it is, how it affects you?

Lisa: Lupus is an autoimmune disease; I prefer the word condition. It mainly affects the muscles and the joints, and can be organ or non-organ threatening. Mine is non-organ threatening, but that can change. Like MS, no case of lupus is the same. It changes like a shapeshifter. One minute you think you’ve got it down and then something will happen and you won’t know what it is, but it’s related to lupus. In the beginning, I was figuring it out based on certain feelings in my body. I found myself in a state of hyper vigilance, which is not fun. You are continually learning as you go. The condition throws different things your way. I often felt like a detective looking for clues.

'I like to say that I am in the process of redesigning my life. And a big part of it is acceptance.'—Lisa Kenner Grissom

Sara: I was going to ask if you approach your work differently now than you used to, but it sounds like you began your writing work as you were dealing with the question of, “How do I approach my life with this new condition?” You really learned how to make them work together at the same time.

Lisa: I did—and I’m continuing to learn. Trial and error is sort of my life theme. I try to view everything as an experiment, especially as an artist and a writer. Lately I’ve been thinking about creative practice and health practice, and how they can be in sync with each other, because they often weren’t. I would go through phases where I’d push through physical discomfort because I didn't want lupus to rule my life. There were periods of intense activity followed by intense burn out, and the burn out can be pretty scary. It's just not sustainable. So I’m learning how to flow with my energy, and to recognize that if I don't take care of my health, then obviously I can't write. I’m using the word “healthstyle” these days—like lifestyle. I also think about health practice and writing practice, and how they can intersect in a more aligned way.

Sara: I love that. Have you figured it out, or is it an ongoing process?

Lisa: I am still figuring it out! It’s definitely an ongoing process. I recently left my day job of seven years—it was a great job and I loved it, but I realized that I needed to adjust in order to match my lifestyle with my healthstyle and my writing practice. I like to say that I am in the process of redesigning my life. And a big part of it is acceptance. For example, I am not a morning person (I’m never going to be!) and I’ve decided that is totally fine. I actually have great energy from 8 p.m. to midnight. That’s my sweet spot for writing. So instead of conforming to another set of rules, I am going to redesign my life so that is my writing time, and the rest of my schedule needs to fit around that.

Sara: That's great, congratulations. What health practices have you found to be helpful that you integrate into your theatre practice?

Lisa: Daily journaling is great, and I am glad I’ve picked it up again. It’s so helpful for both writing and health. It is a good intersection place for what I am trying to do, which is marry those two things. I experience a lot of fatigue, and it can come out of nowhere. I may have big a plan for the day, and then all of the sudden, I can't do all the things I’ve set out to do. Lying in bed is not restful, it’s just frustrating. I read about this concept of active rest, which involves exercises that help the recovery process and often include forms of meditation that stimulate the parasympathetic nervous system. This type of meditation works on your brain in a certain way, so you are actually getting energy instead of languishing. Energy is the currency I deal with. What is going to give me energy, what is going to take energy—I am constantly navigating between the two. There’s this great meditation called Yoga Nidra. It’s a form of “yogic sleep” and you can do it lying down. I have been practicing it every day for the past few months, and it's giving me energy, so I am going to keep doing it.

Illustration by Mari Andrew.

Sara: I’m intrigued by your idea of calling it a chronic condition rather than a chronic disease, or a chronic illness. Language does matter.

Lisa: On a personal level, I don't love the word disease. Who does? I don't like when people say, “It means dis-ease.” There was a great article in the New York Times, What to say when you meet the Angel of Death at a Party, written by a woman living with cancer. It’s about the various types of people someone dealing with a condition meets along the way: the minimizers, the teachers, the solvers—and there is definitely a group of people who imply that we are the root causes of our “dis-ease.” And while I agree that we are affected by our environment and heathstyle choices, we are also the products of our genetics. For the most part, no one causes their disease. The more important issue is how we navigate through it.

'I am so inspired by the activism that’s happening right now in different communities. I feel like those of us with chronic conditions, especially those with invisible illnesses, have something unique and relevant to say.'—Lisa Kenner Grissom

Somewhere along the way I started calling it a condition, because people often ask, “Are you still sick?” It’s something I live with, and there is a difference. When people think about disease, they think there is a cure (or not), but that there is an endpoint. But a chronic condition is every day. I have been thinking about the importance of language, and how we are currently experiencing a dark and scary time in our country, but that the silver lining is that people are giving voice to their experiences, which is so important. For people with chronic conditions, we are also a marginalized community, especially those with invisible illnesses, like lupus or MS. People don’t know you have it, and you don't necessarily want to proclaim, “I have Lupus with a capital L!” but you do want to be seen and acknowledged. As a playwright, I often write about identity, legacy, loss, and trauma, but I’ve never explicitly written about this, or created a character with a chronic condition. This year I have been thinking—what do I want to say on this topic? It's starting to bubble up a bit, to percolate. I am so inspired by the activism that’s happening right now in different communities. I feel like those of us with chronic conditions, especially those with invisible illnesses, have something unique and relevant to say.

Sara: If you could look back to your twenty-something self, what do you wish you had known then?

Lisa: I wish I had matched my work and healthstyle with my creative practice a long time ago, instead of fitting things into a nine to five world. But certain opportunities didn’t exist then. Now we have so many options—people can work remotely, consult, and work as independent contractors. You can create your own job. I would tell people who have chronic conditions, artists in particular, to think through their choices. Ask yourself: “Is this opportunity going to be good for me and my health? Is it going to fit with how I need to live my life?” A residency, for example. I am interested in residences where I can be in community, but also have time alone and in solitude, because that works with my energy. It’s seductive to attend a residency where there is a lot of activity. But for someone with a chronic condition, too much social activity can be draining. So think about those opportunities, and ask, “This sounds amazing, but is it right for me and my health? Is it going to foster my creativity? Is it going to help me further my artistic development in the way I need?“

Sara: On the flip side, the necessity of health insurance is very real for a lot of us with these chronic conditions, so we need to have that nine to five, and then figure out how to make everything else work within that scope.

Lisa: One hundred percent. It's still something I will have to navigate. And it's not easy at any job—should you tell people, should you not tell people…it causes an enormous amount of stress. You’ve got to do the best you can in terms of finding the right environment that is going to be supportive of you, both in your work as well as your artistic life. Having people who accept you whether you’re having a good or bad day. And finding a job where you don’t have to hide who you are, because that can be really tricky. It takes energy! Today, it seems that people will be more accepting because of the activist environment that we’re in, where people are encouraged to come forward and be honest and vulnerable. At least, I hope that’s where we are headed.

Sara: What do you think theatre artists can do for one another around this issue? It sounds like it’s about being open minded, accepting, and understanding that everyone is different. And also perhaps about incorporating chronic conditions into the worlds you are creating, in a way that's more realistic.

Lisa: Yes! There is so much interesting work going on. I don't know exactly where this investigation will take me, but I created a Facebook page called Theatre Artists with Chronic Conditions. I want to invite other theatre artists to connect, share ideas, and support each other. I also have the domain name “The Chronic Project” which will be an evolving, multidisciplinary theatre project about what it means to live with a chronic condition. Stay tuned.

I also recently participated as a writing mentor with the Writers Guild Initiative and Profile Theatre in Portland. Artistic Director Josh Hecht and WGI teamed up to do writing workshops that relate to the work they are putting on stage—which is incredible. They are doing a double season with Lisa Kron and Anna Deveare Smith who have theatre pieces that deal with issues of trauma, illness, and the healthcare system. Profile convened workshops with people from their community who have chronic conditions, and I was honored to help lead one. I’ll be doing a few more this year. When I got the schedule, it said, “We will be starting later and ending earlier,” and I thought, “Yes, because that is our audience!” That’s what people with chronic conditions need. It was such a beautiful adjustment, and it overwhelmed me, the care that they had obviously taken. If we can continue to think through choices for people with chronic conditions, that would be amazing.

Lisa and cast members discuss Building The Perfect Chair at The Road Theatre Company.

Sara: I have been thinking about that a lot for myself lately, too. I love the idea of The Chronic Project, and hope that people can try to start to form more community around it. But it’s tricky, because a lot of people feel weird about going public, which is totally understandable. When I did the first interview with Emily Mann, I had some people reach out to me and say, “Oh my gosh, I had no idea, I have X or Y.”

Lisa: The two of us having this conversation is huge for me, because I haven't been “out.” I have been hiding this for a long time, because I didn't want people to see me as the condition before seeing me as a person and as a writer. I don't know if it’s being inspired by what's happening in the world and seeing other communities support each other, but I am pushing myself a little bit. It's a combination of giving myself a gentle nudge to harness my experiences in a positive way, not only for me, but also for others in my shoes. It's not helpful to feel isolated. I am sure you have felt that way too. I can go online and read countless stories in forums but—

Sara: Those can be scary.

Lisa: Exactly—so scary! Really, I’m saying: “Hey, I am here, I know you are out there, let's support each other.” If I’m having a bad day, it would be helpful to know there’s another playwright or theatre artist out there like me who is having the same kinds of issues, and we can talk and get through it together. Being isolated is hard, and we don't need to be. Most people don't know I have lupus; they would never know because I am always overcompensating. Maybe most of us do the same thing, and it would help to talk to people who get it.

Sara: I think that's really brave and exciting. I have found the more comfortable I’ve become about being “out” about it, the less of a thing it has become for me. I had some negative experiences when I first got diagnosed with how people reacted. But it was the people who were close to me who I was telling, and they were also concerned and didn't know what it meant. Now, if it makes sense for me to mention that I have MS in the context of a story, it’s a non-thing. People don't react to it. And that actually helps me because I don't want to see myself as a victim.

Lisa: Totally. I feel like that's what I have been doing all this time. “I don't want to see myself as a victim, so I am not going to talk about it.” But actually, as you said, by not talking you are giving it too much power in your life. I don't want to say “everyone has something,” because that’s cliché. But everyone will experience unforeseen challenges, whether it’s the loss of a parent, a health condition, or something else. As theatre people, we have well-developed empathy muscles, and when you have a chronic condition it's even stronger. I feel like I have a lot of empathy to give, and I write from that place. I think that comes from having a chronic condition. Lately I’ve been feeling like being “out” is almost a responsibility, as well as a source of inspiration.

Sara: I like to ask everyone if it feels more like a gift or a curse, and how you navigate those feelings.

Lisa: Both. The gift is that it brought me to plant my flag as a writer. And the empathy muscle, that has been the gift, too. The curse is that it's always with you. It takes time and energy from your life, having to constantly adjust and re-frame. The tricky thing is that it can be both a gift and a curse on a daily basis. It allows you to look at the world differently. When you got MS, did it make you think about mortality?

Sara: Not so much mortality as how my entire life could be lived differently.

Lisa: Yes, after I was diagnosed with lupus I felt like I had this ability to see through things: “This matters, this doesn't matter. This is just noise, this is real life.” It put things into perspective. I have to remember this feeling, because when you find a yourself living pretty well with your condition, you can lull yourself into thinking, “Yeah, I am just like everybody else.” And then something happens physically, and you are reminded, “No, I am not quite like everybody else.” And then you make that adjustment once again—“Right, this is what matters.” So you are constantly remembering what is important. I guess that’s the gift side to the curse.

Sara: That is so true. I love that.

Lisa: I really want to thank you for opening up this conversation. Whatever we can do to support and act as sounding boards for each other—we are theatre artists, we should be talking.

Sara: Thank you. I am so grateful to people like you who are willing to help fight the stigma.

Lisa: I am inspired. People are taking action in the world, so let’s connect. Let’s do stuff!

***If you have a story or strategy you’d like to share about how you cope and make your theatre life work, please share it in the comments.

Comments

I love this interview with Lisa Kenner Grissom. She offers so many powerful insights, relevant on so many levels for any writer... with or without a specific health challenge. With her wise and loving voice, Lisa sets a great example for how we creatives can best balance our work and lives.

Loved this interview Lisa Kenner Grissom. That's my hope too. That more people that feel marginalized share their stories with the larger group. We can be equal together; the differences are the best part.

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